National Niemann-Pick Disease Foundation, Inc.

General Organizational Information

Organization Name:

Organization Acronym:

NNPDF

Year Established:

1992

Type of organization:

International Condition(s)-specific organization

Mission Statement:

The National Niemann-Pick Disease Foundation, Inc. (NNPDF) is an international, voluntary, nonprofit organization made up of parents, medical and educational professionals, friends, relatives and others who are interested in fighting Niemann-Pick disease.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Organizational Contact Information

Title:

Director of Family Services

First Name:

Nadine

Middle Initial:

Last Name:

Hill

Address:

401 Madison Avenue, Suite B Post Office Box 49

Fort Atkinson, 53538-0049

Phone:

+1 920 563 0930

Fax:

+1 920 563 0931

Toll Free Number:

+1 877 287 3672

Email:

nnpdf@idcnet.com

Website Address:

http://www.nnpdf.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Health care professionals

Care providers

Families of affected individuals

The public

Teachers

Media

Students

Researchers

Other

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Professional counseling

Medical referrals

Rehabilitation resource referrals

Peer support

Grief counseling

Referrals for non-medical services

Financial referrals

Non-medical services

Crisis intervention

Other

Peer-to-peer counseling

Genetic testing

Awareness programs

E-mail list

Telephone helpline

Genetic information

Clinical or treatment centers

Pen pal program

Genetic counseling

Advocacy

Chat room

Other

Educational materials include:

Fact sheet(s)

Membership directory

Video(s)/Movie(s)

Journal articles on condition

Pamphlet(s)

CD Roms

Research updates

Newsletter

Website

Student materials

Other

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Other

Financial assistance for:

Other